Hi, I'm new here facing mitral valve repair

[Herburban1]

Hi my name is Louanne I'm just 50 and facing repair (fingers crossed) instead of repair at Mass General. My Dr. said the most I can wait is a year. I'm at 40% regurg. and short of breath on exertion and tired in the afternoon most of the time..I'm being seen at the Cardio clinic at MGH. the Dr. my Dr. said is the best isn't even listed here anywhere..I have searched a few times...Dr. Cary Akins is his name and he is supposed to not have a great bedside manor (which I can handle) , but hasn't anyone here ever heard of him?
I am an LPN not working at the moment, so I know enough to be scared #$%@less.

 

[Cooker]

Louanne ... welcome to the zoo ... I don't know about the doctor but if you are that symptomatic waiting a year seems unwise ... Of course my more learned colleagues will be able to address this far better than myself

 

[AgilityDog]

Louanne, you are entitled to be scared! We all were. The philosophy around here is to get the repair/replacement done as soon as possible, while you are the healthiest you can be, because it makes the recovery so much easier, as well as minimizing the damage. I'm one with a rather late diagnosis, and lots of resulting damage, though I can still pretty much be as active as I please. I strongly encourage the "early surgery" option.

Find the best surgeon you can, interview a couple/three and pick the one you think will do the best job for you.

You can always come here to vent your worries, your fears, or to ask questions.
Best of luck!

 

[WayneGM]

Welcome to VR. Sorry for the circumstances but glad you found us. I had a mitral valve repair due to severe regurg and I was asymptomatic so was blindsided by the diagnosis. I was advised not to wait in order to avoid potential permanent damage to the heart as the chamber was starting to enlarge. The OH was not nearly as bad as I had feared and I have no regrets having it done sooner rather than later. Best wishes and good luck.

 

[skeptic49]

Welcome to VR, Louanne! Post often as there are lots of friendly, knowledgeable and supportive people here.

Best wishes,

Jim

 

[Leeroy996]

Hi Louanne, you have a nice name. I can't help but welcome.

 

[Curtsmum]

Welcome, i can't answer your questions but just wanted to wish you the best of luck with everything.

 

[Freddie]

Welcome to the family Louanne.
Ditto, I can't help either......sorry.

 

[Mary]

Hi, Louanne!

Just because a search on VR doesn't reveal Dr. Akins name doesn't mean much. You might start a thread and title it, Anyone know Dr. Akins at MGH? That's apt to get more responses.
And of course it's possible that no one has had him for their surgeon, but I wouldn't worry about it.
I'm sorry to read that you're so scared, but that goes with the territory. I think you will become more comfortable with the idea with the passage of time.

 

[Jkm7]

Louanne, Welcome.

Happy you found us and I'm happy I just read your post.

I had my second OHS at MGH end of February, 2008. I had my first there, as well, four years ago and when I learned by Mitral Valve needed repair or replacement, I wouldn't have dreamed of going elsewhere.

I cannot imagine a CICU that gives better care than MGH. And the Cardiac Surgical Floor is tops. The staff (Nurses, PA's, techs....everyone) are so excellent. There's a reason MGH is always rated among top five cardiac centers in the U.S.

My surgeon is Dr. Alan Hilgenberg. He did both my surgeries and he's outstanding. We hoped for a repair but despite his best efforts, it wasn't possible. Thankfully, we had discussed my choice of valve in the event he could not make a good repair that he felt would last for considerable time. He knew during surgery it was not going to be a good repair and he knew a failed repair was my worst nightmare. He placed a bovine tissue valve per my desire and I am grateful for the excellent care I got from him Twice.

The fine MGH doctors, nurses and staff had me out of CICU about 12 hours post op and home five days after my surgery. I was driving in just under three weeks....this time.

I met Dr. Akins while in MGH this last surgery and his patients seems to really like him. He has an outstanding reputation. Let's face it.... there are no inferior Cardiac Surgeons at Mass General. They are all excellent or they wouldn't be there. I may be mistaken but I seem to recall hearing Dr. Akins performed OHS on Jack Welch... former CEO of General Electric.

If I can help you in any way or with any private questions, please feel free to PM me any time.

Of course you are frightened and anxious and all the rest. We all were. It would be unusual if you were not. But, truly......the worst part is the wait.

We'll help you through the wait and answer your questions.
Information is your best friend.

 

[ALCapshaw2]

This would be a good time to start interviewing surgeon(s), asking each about their experience and results doing MV Repair. Also ask what they would recommend for a Backup Plan 'just in case' the Repair doesn't work.

I expect you will have a number of good Surgeons to choose from at MGH.

As others have indicated, once you know you will need surgery, there is little or no benefit to waiting (which can result in further damage and lessen the chances of a good repair). First Time Valve Surgery is VERY SUCCESSFUL with a 1% risk of morbidity and 1% risk of mortality nationally. At a Major Heart Center like MGH I would guess the numbers are even better (ask!).

Don't worry, EVERYBODY is scared going in.
Most say that the waiting was the WORST part!

If you GOOGLE "Dr. Cary Akins" you will find many links to websites where he is named.

Good Hunting.

'AL Capshaw'

 

[Herburban1]

Thanks for the info, I have googled him and found lots of info. I was just puzzled that no one here had him for a Dr. Being a nurse I like to get info from a nurse or someone that works there..I just remembered my husbands cousin is an RN there so I am getting i touch with her...I just got off the phone with the Drs. office at the clinic and they moved my appointment up a week to this Monday...Yikes! I want to get the ball rolling but I also want to hide under a rock....

 

[Phyllis]

Welcome. You are going to a great facility and JKM7's post should be very reassuring. Give a yell when you have a date, so we can put you on the calendar and help you "over the mountain". Best Wishes,
Phyllis

 

[ALCapshaw2]

Thanks for the info, I have googled him and found lots of info. I was just puzzled that no one here had him for a Dr. Being a nurse I like to get info from a nurse or someone that works there..I just remembered my husbands cousin is an RN there so I am getting i touch with her...I just got off the phone with the Drs. office at the clinic and they moved my appointment up a week to this Monday...Yikes! I want to get the ball rolling but I also want to hide under a rock....

You may want to read the "stickys" at the top of the list of threads in the Valve Replacement Forum and then browse though the listings so that you are better prepared to discuss 'backup plans' when you meet with surgeon(s), 'just-in-case' the Repair does not work. We have several members who did not get their First Choice for a variety of reasons. As the Boy Scouts say, "Be Prepared".

'AL Capshaw'

 

[susieq14]

Hello Louanne,

I am in the waiting room and nowhere near picking a surgeon so I can't offer any advice on Dr. Akins or what to ask him when you meet him but I did want to offer you a great BIG HUG: ((((((((((((((((((((LOUANNE))))))))))))))) and send you lots of positive thoughts and good wishes as you prepare for your first appointment with the surgeon. I would think that you are in good hands at MGH. I also live in the Boston area and if and when I need my mitral valve surgerey I want to go to either MGH or BWH.


I certainly understand how you must be feeling - it must be quite overwhelming and scary but just remember everyone would feel the same way so don't beat yourself up over it. Read through some of the many hopeful and inspring posts here from others who have shared their surgical experience both before, during and after and hopefully you will get lots o athe answers that you need and encouragement and reassurance.

Take Care!
Susie

 

[hall]

Hi Louanne. Sorry I can't answer your question either. Just wanted to welcome you! Looking forward to hearing from you.

 

[zipper2]

Hello Louanne, Welcome to our great place
Glad you joined and have found a chair to
relax and ask away any questions.
Theres alot in common here to help with
your answers.

zipper2 (DEB)

 

[ponytaila1a]

I want to thank everyone who answered my questions concerning the heart cath.
I was faced with waiting over the weekend....your support and answers were invaluable.
I was told the regurg is my only problem and waiting for a call from a surgeon. I also have no symptoms and want to put off the surgery that my cardio refers to as "simple".
Thanks again to all. I will be back with further questions!!!

 

[Snoviper]

Hello and Welcome!

 

[debster913]

Hey, Louanne--

Scared #$%less? Yeah, me too. I even started grinding my teeth in my sleep because of it. I had mitral valve repair almost 2 1/2 years ago and it was the best thing, other than graduating college, getting married, etc., that ever happened to me.

You're still young and your recovery should be relatively easy. But, welcome and feel free to ask away!

Best,
Debi (debster913)